No, I'd never heard of it either, but a friend's daughter is shortly to give birth to a girl with this condition, in which the upper organs (heart, lungs) are imperfectly isolated from the lower (liver, kidneys, gut). It's not a great start in life for the poor wee mite, who will have to be whipped off to surgery for emergency repair.
Anyone have experience, first- or second-hand, or medical, of CDH?
My niece had this problem, in her case it was severe enough to leave her with one lung. It was touch and go to begin with, and she was in and out of hospital a lot in the early years, has to have supplementary feeding through a stoma, and physio to prevent scoliosis.
She's 7 now, feeding PEG should be removed soon, and despite her trauma at the mere mention of NHS111 she's a remarkably strong, positive and resilient little kid. She's so full of try hard, and you wouldn't guess she had such a hard start.
That's a tough hand to be dealt. Just a general comment - kids are amazingly resilient. When I worked at the Shriners Hospital in Tampa, we would have kids with really challenging orthopedic problems and they would mostly be very positive. If there were problems, it was the parents! Likewise in my wife's epilepsy practice - kids with chronic problems, but they would just deal with them, if the parents were positive then things were good, or as good as they could be. Again, parents could be the problem, if things were especially challenging. Parents who were positive were great and we would have good (or goodish) outcomes.
So it sounds as if your friends will manage it and your friend's daughter sounds as if she will get the support she needs. Kids still have a lot of the repair processes working well, unlike us older folks!
Not the same situation, but a friend had a baby with Downs and got incredibly frustrated with people saying 'sorry', when she had just given birth to the most beautiful and perfect baby girl on the planet.
Despite the difficulties this baby will be special, loved and in its own unique way perfect, don't add to the parents difficulties by forgetting to congratulate them on parenthood.
I used to work in xray and dealt with many Downs children. They were always kind and gentle and were always great to deal with. Then we would get the drunks in out of the nightclubs causing trouble and assaulting staff. I know who by far are the most preferable.